Writing on c-PTSD more broadly than child abuse
July 6, 2021 7:42 AM   Subscribe

My therapist thinks I have c-PTSD due to growing up with a scary, poorly understood health condition. I bet he's right. But the stuff he recommended I read about c-PTSD is really very heavily focused on the aftereffects of being abused or neglected by your parents. Are there books I could read that cover this sort of trauma more generally, without presupposing specific people played specific roles in it?

My therapist suggested I read Complex PTSD: From Surviving to Thriving. But I'm finding it hard to take, because it doesn't really speak to my condition. The book focuses very heavily on mistreatment by abusive caretakers in early childhood. That's not me.

I grew up with medical trauma: a scary and humiliating condition nobody really understood at the time, well-meaning bad advice from experts including "you're faking it" and "just don't tell anyone ever," bullying from peers who knew something was up, etc. My parents were flawed, and were surely part of the problem. But they weren't the whole problem, and they were often on my side. The reason I felt trapped was that I couldn't escape my body.

Reading Walker's book is like doing a slow sentence-by-sentence translation project. Ok, this sentence about "my" "narcissistically" "abusive" "mother" might apply to my least favorite doctor, sort of? Only I only saw that guy three times in my life? And this sentence might apply to my actual mother on a bad day when she let her frustration about the situation get to her, and this one might apply to my relationship with my own body, and this one doesn't seem relevant at all...

Is there something I can read instead that starts out broad enough that I won't have to do this translation?
posted by flexible-footwear figurine to Health & Fitness (7 answers total) 11 users marked this as a favorite
Best answer: If you can handle reading about other people's trauma I'll recommend The Body Keeps The Score. Even though it's not explicitly about C-PTSD, it talks about multiple types of body-related situations with a combination of compassion and hard science. It really helped contextualize my ASD-related trauma growing up.
posted by JZig at 7:53 AM on July 6, 2021 [7 favorites]

I can corroborate that I have seen the effects of childhood medically necessary treatments replicate the effects of childhood abuse and/or neglect.

I knew someone with what was later diagnosed as BPD, and when I met her family I was confused, because the other people I'd known with similar personalities had always had abusive families (+neglect etc), until I realised that as she had Cystic Fibrosis, the medical treatments she had had to endure as a child *felt* like physical abuse, that having to go to hospital etc *felt* like being abandoned and neglected, that any kind of tube or forced feeding well, felt like abusive forced feeding. Being in pain feels like your loved ones didn't stop it

It didn't matter that the treatments were to help her survive, and that it was from good people, she had been unintentionally hurt by people she loved, and that caused the same problems with interpersonal relationships as if she'd intentionally been abused by her loved ones.

So, I don't think individual events or people have to be mapped on a one by one relationship, just the vague overall impression of your loved ones aren't stopping you from being hurt, and you're supposed to be 'good', but that doesn't stop you being hurt.

Maybe something like DBT treatment? It doesn't really focus on who's fault it is, so much as start practicing the self soothing and emotional competence skills that are commonly stunted due to trauma?
posted by Elysum at 8:41 AM on July 6, 2021 [4 favorites]

Best answer: Just note a lot of people find TBKTS traumatizing because of the lingering focus on sexual assault, and some of the science hasn't aged well (and among other things, contributed to the very misguided "recovered memory" theory).

I don't have personal experiences with these, but had bookmarked them for a family member:

Peter A. Levine (inventor of Somatic Experiencing therapy, has experience in medical trauma): Waking the Tiger (bit memoir-y, the second book might be the one to go directly to) and Healing Trauma.

If you can handle it (or can recruit a friend to do the legwork), I suspect the best references to whatever literature or education is currently available for parents of children with complex medical needs will be found in support groups for parents/families. Medical or Diagnostic PTSD is not yet a clearly-defined subset of PTSD, but there is definitely research being done and written. (I tried skimming the website of the Children's Hospital of Los Angeles thinking surely they'd have something, but I didn't find anything and then stumbled across the careers page that said "Living in Los Angeles is surprisingly affordable" and I can't take anything else on that website seriously now. Maybe try CHOP in Philadelphia, which is a highly-respected institution.)
posted by Lyn Never at 8:54 AM on July 6, 2021 [6 favorites]

I don't have a specific resource to provide but wanted to throw out there that the phenomenon you are describing is often called pediatric medical trauma and that may be a useful search term for you. Best of luck finding resources and solace.
posted by reren at 8:56 AM on July 6, 2021

Best answer: Judith Herman's Trauma and Recovery takes a pretty broad and fundamental approach to trauma, discussing both PTSD and C-PTSD. With the latter, she covers at least childhood abuse, wartime torture, and kidnapping and captivity.
posted by bricoleur at 10:13 AM on July 6, 2021 [2 favorites]

Just wanted to note that the lack of understanding of disability and medical trauma is A Thing. I’m disabled and have medical trauma. My therapist has health issues. We both have not been able to find good info about medical trauma in PTSD / CPTSD writing. Our goal is to focus on symptoms and solutions. But there is a glaring blank spot in literature and training around this. Possibly following some disability activists who focus on mental health or putting this question into specific disability centered spaces can help and I would be interested to know if anyone has anything too.
posted by Crystalinne at 12:16 PM on July 6, 2021 [4 favorites]

This is a new book (published this year) that may be helpful. Fisher’s approach is less about the trauma “story” and more about the way that we have coped with trauma. As a therapist, it seems to me that coping strategies have key commonalities regardless of traumatic origins. You can obtain a free sample on Amazon, or feel free to DM me and I can share a few other helpful pages as well. Hoping you find some good resources. This is a really important question and the answer would benefit so many.
posted by dreamphone at 5:22 AM on July 7, 2021

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